No improvement to tiredness after B12... - Pernicious Anaemi...

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No improvement to tiredness after B12 injections

Suesue246 profile image
40 Replies

I have been having B12 injections since being diagnosed with pernicious anaemia 18 years ago. I never feel an improvement in energy levels and tiredness after an injection.When my dad had his injections for P.A. decades ago he would always say he could feel when his injection was due because of increased tiredness.

Should I feel improvement in energy in the days after an injection? I feel like I never have done.

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Suesue246 profile image
Suesue246
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40 Replies
Nackapan profile image
Nackapan

Perhaps they are not frequent enough.Do you have other symptoms

Some symptoms overlap with many other things. ??

Have other things been eliminated??

O still have dibilitating fatigue after 5 years of frequent b12 injections.

But many many improvements from where I started.

Still monitor iron/ ferritin.

Vit D

Thyroid function

Whatever they will test

Suesue246 profile image
Suesue246 in reply to Nackapan

My other symptoms are muscle and joint aches, concentration and memory issues in relation to retaining detailed information and reflux and heartburn caused by having zero stomach acid. I've had various blood tests over the years for thyroid, diabetes, coeliac and iron levels etc. I'm always told my iron is OK, low side of normal. My vitamin D has been low at times and I take a normal vitamin D supplement when I remember plus a multivitamin with iron.I do know when my vit. D has been as low as 17 it took months of prescription level supplements to get it to 33. The one year where I specifically sat in the sun often to get the level up it did rise to 70. So next spring I'm intending to get some from the sun instead of covering up.

I do wonder if my lack of stomach acid is causing nutrient deficiencies, in turn leading to my other symptoms.

MorningMist profile image
MorningMist in reply to Suesue246

I think a level of 33 for d3 is barely sufficient. I started out with a similar level (after a holiday in the south of France) but with a year plus of taking 2000iu d3 with 90mcg k2 daily it reached over 90. Magnesium helps too.

Suesue246 profile image
Suesue246 in reply to MorningMist

Thank you. I will ask for levels to be redone and I'm thinking about magnesium.

FancyPants54 profile image
FancyPants54 in reply to Suesue246

Your vitamin D at 33 is way too low. Have you had your thyroid properly checked? Low stomach acid and low nutrient uptake is a classic symptom of that. We Hypos are always taking vitamins. We have too.

Suesue246 profile image
Suesue246 in reply to FancyPants54

Thank you. I will get my bloods rechecked.

Hectorsmum2 profile image
Hectorsmum2 in reply to Suesue246

post your results on thyroid uk even if the doctors tell you they are normal.

Nackapan profile image
Nackapan in reply to Suesue246

Do keep up daily vit D . I need 2000-3000 . After loading it went from 19 to 61 .

Now in the 70s with a daily supplement .

How often do you get b12 injections ?

Suesue246 profile image
Suesue246 in reply to Nackapan

I have injections every 10 weeks. I am going to ask if I can try more frequently.

Nackapan profile image
Nackapan in reply to Suesue246

Yes do .8 weekly shoukd be easy to get .

Try 8 weekly?

Suesue246 profile image
Suesue246 in reply to Nackapan

I have B12 injections every 10 weeks. Just recently getting more tired despite not doing more. Feeling like having afternoon naps but I don't do that as I shouldn't lie down after lunch due to my reflux.

Vitali-ep profile image
Vitali-ep in reply to Suesue246

100% lack of stomach acid causes deficiencies in most vitamins and minerals, thus causes many symptoms.

I had similar issue after taking omeprazole for too long,

You need decent stomach acid to break down food properly to get nutrients and minerals out and into your system.

Suesue246 profile image
Suesue246 in reply to Vitali-ep

Thank you. I was wondering about this.

Vitali-ep profile image
Vitali-ep in reply to Suesue246

I solved my stomach issues with cayanne pepper, 1/4 teaspoon twice a day in a shot with water... mentioned this a few times on different places because it was soooo good.

Cayanne pepper stimulates blood, cures stomach ulcers and stomach issues.

Also increases stomach acid (take just before meals) and helps breakdown nutrients etc

If interested do you own research on it.

I was B12 deficient among other things, had injections which did help, but was deficient in a lot of things as not digesting food properly.

Now I am not deficient in anything

Suesue246 profile image
Suesue246 in reply to Vitali-ep

Thank you. I will research this.

Marz profile image
Marz in reply to Suesue246

Taking a multi-vit containing iron is rarely helpful as it can block the absorption of other nutrients.

As PA is an auto-immune condition it may be helpful to rule out auto-immune thyroid with the correct testing - which is very rarely done in the NHS.

Low thyroid vould explain your symptoms. Happy to explain further....

Suesue246 profile image
Suesue246 in reply to Marz

Thank you. A gastroenterologist advised me to take a multivitamin with iron. Are you suggesting that I take an iron supplement at a different time of day to a multivitamin?I will look onto low thyroid. Thank you.

Marz profile image
Marz in reply to Suesue246

Which Multi-vit are you taking ? Some contain cheaper and less absorbable ingredients.

Iron should be taken well away from other vitamins and minerals.

Better to test Folate Ferritin and VitD individually and supplement accordingly.

Di you have thyroid test results ? You are legally entitled to all results...

Suesue246 profile image
Suesue246 in reply to Marz

I'm just taking supermarket multivitamins with iron at the moment. I can't recall when I last had a thyroid test. I will ask for it again in the light of my tiredness and aches and then get a print out of results. Thank you.

Marz profile image
Marz in reply to Suesue246

Sadly the NHS very rarely do the correct thyroid testing. Like many others who have responded to you we are thyroid sufferers as well as having B12 issues.

Thyroid UK here on HealthUnlocked have many members who are also members here.

You probably only had the TSH tested when the FT4 FT3 and Anti-TPO and Anti-Tg are also needed for a diagnosis.

I joined Thyroid UK in 2011 and have managed to find wellness by following the advice of well qualified members. Click onto my username above to read my bio and the 100's of Posts and Replies.

Your best approach would be to order on-line testing from Monitor my Health as many 1,000's of us do....

Suesue246 profile image
Suesue246 in reply to Marz

Thank you again. I appreciate your reply.

Suesue246 profile image
Suesue246 in reply to Nackapan

Can I ask do you ever feel a boost in energy levels after an injection and how often do you have them? Thanks.

Nackapan profile image
Nackapan in reply to Suesue246

I need them weekly.Have tried different regimes.

The longest 7 lasted after loading doses was 5 weeks.

My aim was at least monthly.

I just wasnt functioning.

I was on 2 weekly for a year.

Also triedorak b12 sprats ect to try and get a bigger gap.

My prescription of 2 weekly is under threat yet again !

topazrat profile image
topazrat

I self inject weekly and don't feel any better after a jab either, but if I miss a jab I feel worse - a lot worse. My Mum is the same. I think if you're at a frequency that suits you, you roll along feeling OK, unless something rocks the boat, like an infection or overdoing it for example.

But, if symptoms haven't improved at all, then it could be that you need more frequent jabs.

Suesue246 profile image
Suesue246 in reply to topazrat

Thank you. Its useful to know.

Nackapan profile image
Nackapan in reply to topazrat

Its in 3 generations of my family. All need different frequencies.

Mum 8 weekly

Daughter 10 weekly

Me 'officially '2 weekly

Wwwdot profile image
Wwwdot in reply to topazrat

Hi Topazrat

You description is spot on for me as I too know it’s working when I miss a self injection. I still inject every day. And I take a methylcobalamin supplement and a B complex liquid supplement during the day and that helps stave off getting too tired.

Regards stomach acid after 9 months of kefir and kombucha I now have no low stomach acid symptoms. I also take one Betaine and Pepsin every day which helps increase stomach acid.

I take supplements to get me in the above normal range for everything and vitamin D I was told to aim for 100 by a B12 consultant.

The good news is there appear several options to explore to feel better. Best of luck in finding what works for you.

🤗🤗🤗

Suesue246 profile image
Suesue246 in reply to Wwwdot

This is useful to know. Thank you

Wwwdot profile image
Wwwdot in reply to Suesue246

Hi Suesue

Apologies I meant to reply to you! 🤦‍♀️

🤗🤗🤗

KBird01 profile image
KBird01

I was told my iron and ferritin levels were fine, but I accessed my medical records and my ferritin levels were scraping along the bottom in the 20s for years. Thanks to advice on this lovely forum, I looked up iron deficiency without anaemia and started on regular iron supplements. Within 5 weeks I noticed brain fog, fatigue and mood lifting. Within 3 months I was back walking on the fell tops.

I also struggle with vitamin D levels and supplement at least 2000 iu daily + sun in summer to get my levels up.

Suesue246 profile image
Suesue246 in reply to KBird01

Thank you. I am finding your reply and those of others helpful.

Dandelions profile image
Dandelions

Head over to the Thyroid forum. The people there are really helpful and knowledgeable. They can tell you exactly which test to take and which results to aim for. ( thyroid and vitamin)

I’ve learned from them that the levels which doctors accept as ‘normal’ often leave thyroid patients feel rather unwell. To me it sounds like this could be the case with you.

Also make sure to measure T3, T4 and TSH. Often only TSH gets measured, which doesn’t tell us very much about your thyroid’s functioning.

Suesue246 profile image
Suesue246 in reply to Dandelions

Thank you. Useful information

Rexz profile image
Rexz

Hi Suesue246,

After I started B12 injections a bit over three years ago I've never felt a boost in energy after an injection. This energy boost feeling is common amongst those without PA/AMAG but remember for those with PA the cause of that is Autoimmune Metaplastic Atrophic Gastritis (AMAG). Your body is constantly fighting itself and thus you've constant chronic inflammation. This inflammation by itself causes your body to sequester iron.

Why sequester? its an immune response. since viruses and bacterial infections require your body's iron to replicate your body's immune system is attempting to keep that iron from being available to those viruses/bacteria to starve them. I know your doctor/GP is telling you your iron is OK but if you've AMAG/PA and your Ferritin is anything below 100 ng/mL then it is NOT OK, it is too low. normal range is 30 to 400 ng/mL. Most all doctors/GPs do not know this. Doctors/GPs are trained to look for Anemia. However, there is a condition called Iron Deficiency Without Anemia (IDWA) of which I discuss in my post at

healthunlocked.com/pasoc/po...

Here you can find some references and papers you can take to you GP regarding this.

So the double Whammy!!! not only is your body chronically sequestering your iron...if you've low/no stomach acid, highly likely if you've AMAG/PA then you may have trouble "absorbing" iron also. In my post I show how I was deficient for two years watching my Ferritin steadily drop until I was finally bedridden again with severe fatigue, heart palpitations, restless leg syndrome etc. I mention to my doctor my Ferritin was way below normal at 22 ng/mL and she said well the rest of your blood RBC and Hemoglobin levels look fine so you don't have anemia and sent me out the door. At 22 ng/mL with that being sequestered I had essentially zero iron available.

So, check the post, keep those links and find a doctor/GP that will listen. Since my diagnosis of IDWA this year I've had 7 iron infusion IVs to get my iron levels back to 111 ng/mL and now once a quarter I have a complete iron panel run and if needed I get a top-off IV of iron to keep it well above 100.

All that said, with my B12 weekly injections and serum B12 pegged at the max measurable amount of 2,000 along with my iron infusions I still have some level of fatigue and that is most likely due to the continuous immune system battle that is going on within us. As I say with PA "It Ain't Just B12!"

Best wishes, Rexz

Suesue246 profile image
Suesue246 in reply to Rexz

Thank you. Along with other replies you have given me a lot to think about. One of the main things I have realised is when I get blood results I need to request a print out instead of phoning for results, only to be told they are normal and therefore OK.

debra_bill profile image
debra_bill in reply to Suesue246

You can access your record on the NHS App. app.patientaccess.com

The easiest way to sign up is to ask your GP surgery for an introduction letter (can't remember what they call it I'm afraid,) they'll give you a letter with links & a sign in code.

Alternatively open the App & go via the 'NHS - Continue to NHS login' button on the sign in page, but you may still have to request that your records are made available to view. Some seem to load everything without you asking, others.......

When you change GP you lose access & have to start again, which is a pain. I had to fill a form in saying that I could cope with whatever I saw, this time!

I don't feel any more energetic after a jab, but feel shattered the day after. I SI every other day

Peder1962 profile image
Peder1962

I would change self inject and take it more often. I need to SI three times per week.

WiscGuy profile image
WiscGuy

For some unknown reason, many, perhaps most, doctors seem to display a pathological resistance to adequate treatment of B12 deficiency, and fight patients tooth and nail on this matter. This intransigence is especially puzzling given that B12 injections are not toxic at any level, which assertion no respectable medical source contradicts.

The following is taken from the section, "How should treatment be given", from the peer-reviewed medical-journal article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency":

[Start quote]

For parenteral therapy in cases of megaloblastic anemia, it has been advised to administer 1000 mg hydroxocobalamin IM twice weekly for a period of 5 weeks, and the dose is reduced to 1000 mg IM every 2 months thereafter.

In case of neurologic symptoms or abnormalities, it is suggested to administer hydroxocobalamin,

1000 mg once or twice weekly for a period of up to 2 years, and the package insert for

hydroxocobalamin has included these particular instructions for several decades. ... Clinical practice has shown that in a substantial number of patients seen in a tertiary care setting, injection frequency cannot be reduced after the initial loading regimen.

[End quote]

I personally have injected B12 daily for just over two years, because I want to prevent further nerve damage, and I want to repair existing nerve damage to the greatest extent possible. I follow quite closely the suggested treatment level for B12 deficiency with neurological damage because I dont think the treatment level specified for B12 deficiency with only blood symptoms, which is apparently what you are following, is adequate for achieving my two goals regarding neurological damage.

Suesue246 profile image
Suesue246 in reply to WiscGuy

Thank you. I will reread all of the replies I have received here over the coming days and work out a plan of action.

Chocolate41 profile image
Chocolate41

I am beginning to feel better now as injecting every other day.I was waiting until I felt exhausted but that wasn’t doing me any good.I had just got over a chest infection so felt very low.

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